My IEP Hero with Erika Levine
Hey Team!
Today, I’m talking with Erika Levine, a special education professional with a clinical background in Occupational Therapy. Erika has made it her mission to simplify the legal and procedural hurdles that keep parents from getting their kids the support they’re legally entitled to, drawing from her deep well of lived experience as both a professional and a parent of neurodivergent children.
In this episode, we get into the nitty-gritty of advocating for a child who isn't "failing" but certainly isn't thriving. We dive into the legal weight these documents carry, the difference between an IEP and a 504 plan and how we can walk into those meetings with six professionals without feeling like you’re the one being sent to the principal's office. Erika also shares some personal history about her own mother’s advocacy and why she created "My IEP Hero" to help parents navigate the system.
Mentioned in this episode: https://myiephero.app/
If you'd life to follow along on the show notes page you can find that at HackingYourADHD.com/275
YouTube: https://tinyurl.com/y835cnrk
William Curb: All right, well, it's really great to have you here. There's a lot going on here that people don't have a great understanding of. And I guess really a first place to start is like, what is an IEP? Because people are going to be like, that's kind of a weird term.
Erika Levine: Sure. Okay, so an IEP is basically a specific tailored individualised education plan for kids K through 12. Typically, they touch on this child's learning needs, their specific goals, if they're academic, if they're behavioral, specific supports, and implementation that will be utilized by teachers to help facilitate the most natural learning environment for a student with special needs. It's progress monitored, there's benchmarks, there's goals.
And it is created by a team. So this is a team of special educators, general educators, paraprofessionals. So like OT, PT, speech and language, psychologists, and also parents as well. So and the schools need to legally adhere to this. This is a legal binding document that needs to be followed very strictly. It needs to be explicit to the certain child. So it's not like a globalized, okay, this child is diagnosed with ADHD. Here are specific goals for this individual child.
William Curb: Yeah, and that makes a lot of sense because we all know like, everyone's diagnosis comes with their own quirks and what's hard and what's not. And so yeah, having a generalized like, oh, this is what you do for ADHD never would work in a broader sense.
Right. And you also like address something else that I had been thinking about, which was, you know, like, why don't we're just emailing with like the teacher and getting things set up. It's like, okay, this makes it like legally binding.
This is what has to happen. And it's documented. So one thing that I just came up in my head too is that people also have heard of like the 504 plans. And how is that different from an IEP?
Erika Levine: So a 504 plan is more tailored to behavioral needs and accommodations. So this child may be labeled other health impaired or ADHD. And they need just specific accommodations like longer test time, being able to get up and move freely about the classroom, having instructions read to them, having a smaller setting during testing, more along those lines.
William Curb: Yeah, makes sense. Yeah, that you need to have kind of like the separation like this is what this is doing, this is what that's doing. And I imagine a lot of kids have both. Correct.
Erika Levine: Yes, this is very true.
William Curb: So I'm sure one thing that a lot of people are wondering too is like, oh, this seems like a great thing, but I don't even know what to ask for. What are like some reasonable like accommodations someone might be looking for?
Erika Levine: Okay, so if we're saying the child has ADHD, this child has been tested already, this child has gone through the whole formalized testing. And then they've been diagnosed by either developmental pediatrician or a psychologist. So that would be the first step to have them evaluated, get the formalized testing. And then you meet with the IEP team. And this consists of, like I said, prior the school psychologist and outside psychologist, parent, advocate, teachers, both general and special ed teachers, if it's a related service needs speech, OT and PT would also be involved.
And for a child with ADHD, accommodations may look like extended test times, smaller groups, having instructions read aloud, being able to move around the classroom freely, access to fidgets, those type of things.
William Curb: Okay, yeah, that makes a lot of sense to me. Because yeah, it's, you don't want to just leave this up to like the individual teacher, because some of them have more understanding of how the kids work and others don't. Sure.
Erika Levine: So I guess the first step would be to reach out to the classroom teacher and have meeting with them to address the needs. And then going forward would be testing. And then after testing, the IEP team would meet and proper accommodations would be created.
William Curb: Yeah, that sounds great. Because it's my kids have their IEPs. And it's, it is like a very weird situation when you're going into that assessment and being like, Oh, what do they need to like, I mean, these things, these things would help them. But I don't know what's reasonable to ask. And what is not.
Erika Levine: Well, anything that you suspect to be reasonable is reasonable to ask. So you are, you know, your child's best advocate, you know, your child's the best, you are the professional on your own child. So really, whatever you feel is important to implement, that's what you ask for. Most parents don't know that they can request these things.
William Curb: Yeah, it is great to also help the teacher involved, because we're not present in the classroom to see how the kid is reacting in the classroom. Sure.
Erika Levine: Yeah, behaviors at home can be very, very different than what is going on in school.
William Curb: Sometimes during like, parent-teacher conferences, I'll be talking with the teachers and they're like, Oh, yeah, they're, you know, they're doing this, all this helpful stuff. And I'm like, and you're not doing that at home. Why?
Erika Levine: I know, yes, they tend to be, you know, on better behavior in classrooms. I know for my daughter, she's an expert at masking things. And she holds it together. She's a rubberband child in school. She comes home and the wheels fall off. She's like licking the wall. She's climbing the wall.
She's eating things that should not be eaten, sticking things in places that they should not go. So yeah, so oftentimes these things get overlooked. They're like, nothing is impeding this child's learning. They're fine.
William Curb: Well, and I think masking is a great jumping off point here too, because should we be asking for things that will let the kid mask less at school?
Erika Levine: Yeah, yeah. I mean, children show their stress in different ways, right? So I know for a specific child, when they start telling me their stomach hurts, their head hurts, their fingernail hurts, I know that they are starting to feel stressed, whether it be from mom didn't pack the right lunch to this test is really overwhelming.
I don't know how to handle it. So teachers have to be, they have to have some type of rapport with these children and understand that the everyday element or these weird outlandish things are not necessarily what's going on. It's they're masking it. They're trying to hold it together. And this is their way of saying, I'm in trouble right now. I need help.
William Curb: Yeah, because I do know there's a lot of, it can be very hard to ask for additional accommodations for kids that are seeming to be doing great.
Erika Levine: So the system is set up for failure. So let's let this child just float by and, you know, maybe not even retain anything that they're being presented with, but they're, they're holding it together in school, and they're coming home or having breaks from school and there is no retention. They are regressed completely. They cannot remember a thing. They really do not know what is being taught to them. So it's, it's tricky. It's tricky for sure.
William Curb: Yeah, because I've definitely heard from lots of other parents and experienced myself just the kid getting off of school and then just melt down immediately. Like maybe not melt down, but at least like just acting out in ways that you just normally don't see. Sure.
Erika Levine: It's like the overstimulation and then they, you know, keeping it together for however many hours they're in school and then they come home and they're just so overstimulated. They don't know what to do and how to calm themselves or how to properly advocate for themselves.
So it's quite tricky for sure. And oftentimes these behaviors are looked at negatively and it's the child's being bad. They're acting out there. They're disrespectful. They're unruly, but this is like behaviors that are out of their control, which it's difficult and hard, hard for a parent, hard for an educator for sure.
William Curb: And hard for the kid because they just don't like, you know, when you're like, ask them like, why are you doing this? I was like, I don't know. Yes. Yes. So moving this to like the my IEP hero, what does that do?
Erika Levine: So it's a parent facing tool. This is to help parents navigate the system. You know, the system is filled with all these big crazy words that nobody really knows, the educational jargon that an average person does not understand.
So again, saying going into a meeting and not understanding what to ask for or knowing their rights or knowing what they are entitled to. So this may be for a younger parent or a parent, a highly educated parent. It's the spectrum is so broad, but it's just to help navigate the ins and outs and the complexities of knowing what your child is legally entitled to. Parents are the experts on their children, they know, and going into these meetings, it could be very intimidating. You're sitting across, you know, the table of six professionals, and you have not an idea, not a clue of of what to ask or how to properly ask or how to advocate for your child. So my IEP hero was created for parents.
William Curb: Great. Yeah. Because I know it's also, schools don't necessarily want to be doing a lot of the IEP stuff just because it costs money. And so if they don't want to be unnecessarily using those funds for people that don't need it, but that's a barrier to entry then.
Erika Levine: It's also unfortunate that a lot of schools will not go the extra step to make sure that that child gets what they need. It all comes down to the dollars and cents and the manpower. And you can't as a parent going into a meeting and being denied something because they don't have enough staff or there's not enough funding or they're not trained in that program. You are legally entitled to whatever it is that your child needs if it's being trained in a specific reading program or a specific math program, but they don't have the staff for it. They have to go out and find the staff to accommodate this child. And parents just don't know that. And when they're met with a no, that's it. It's a no. Yeah.
William Curb: So I could see how having that like this tool on their side being like, yeah, you have, you don't know what you don't know. So you need to have this education because you don't necessarily have an advocate, like you're advocating for your child, but you don't have an advocate for yourself. That's what you need. Right.
Erika Levine: And, you know, advocates can be very costly. Some families cannot access this. Some families don't even know that an advocate exists. So this is a tool to help make this more attainable. This is like I said, it's for the parents to make sure that your child is getting what they are legally entitled to. Yeah.
William Curb: And I know a lot. Yeah. Parents don't know about that. Yeah. You can get these IEPs because I've know I've talked to other parents and been like, oh, yeah, I'm going to go to this IEP meeting thing and they're like, what's that? And I'm like, how do you not know about this?
This is so important to know about. For sure. But yeah. But again, like, yeah, no one is educating people about this because there's not like a specific person that's going to be in your life to educate you about this, I should say.
Erika Levine: Unless you've gone to school for it, right? So.
William Curb: Yeah. That's just one of those things that's very easy to miss because, you know, that's what's kind of missing there. So when we're thinking about trying to find these ways to better support our kids, what are some outside of the box accommodations? I'm like, I don't know if that's really what we're looking for here.
Erika Levine: The idea is not out of the box things. These could be very basic accommodations. So for example, I have a child who is twice gifted. So they're on one end of the spectrum, super, super intelligent, but present with another disability, very, very, very capable grades are great, but like executive functioning is problematic. So their disability is not impeding their learning.
There's not a problem in school, but in globalized in the world, there's a problem. So you can go into a meeting, have your child evaluated from top to bottom and them not being classified to be a student to receive an IEP. So they are denied services because they are presenting perfectly fine in school.
There's nothing going on in school, but in real life outside of school, this child is falling apart. So when I went into this meeting, child was declined services. I requested for an individualized educational evaluation. So the parent goes out and gets further testing by an outside psychologist and they do full testing from IQ to executive functioning to memory to whatever. They get a parent history, they get a teacher history, they get any related service providers input, and they run this test.
It's a lot more thorough. And that can oftentimes grant accommodations for your child. So being met with a no, most parents will just stop there because they don't know that they can push further or have the school provide the funds to pay for this outside evaluation. So after having the outside evaluation, now we see, yes, there are these certain things that were not tested by the school, but tested from an outside individual that click the box is that, yes, this child very well deserves an IEP or a 504.
William Curb: My daughter is very bright and I was just always like, yes, she's never qualifies for these things because they're like, yes, she is academically very gifted. And so and I'm like, yeah, but she's struggling in certain areas with this, with like the anxiety surrounding it. I want to give her the best chance to not burn out in school. Sure.
Erika Levine: And not be riddled with anxiety for, you know, it could be a change in a schedule that can set a child off. It could be, you know, an impending looming test. It could be, like I said earlier, mom didn't pack the proper snack in my lunchbox. Anything could set a child off and make them, you know, their anxieties present for sure.
William Curb: One of the things that parents will also probably experience during these students is that getting over themselves in these meetings where they've maybe they didn't have these accommodations or even like the option to have them. And so it's kind of this either, you know, like they're like, I don't know, I should ask her this or even like, do they even need this? Cause I.
Erika Levine: So my IEP heroes started from this, from this exact experience. So it's when I was a little girl in grade school, I was struggling. I presented fine. I could read.
It took a longer time for me to read, but by second grade, I was reading and I was, you know, meeting all the boxes, but we would go off on a break, a summer break or a spring break and I would come back and I knew nothing, nothing that was taught to me a week before. I could not remember it. I could not apply it. It was horrible. And the struggles at home were so, so significant. And my mother not being an American citizen, it was and not knowing the system, but she knew there was something going on. I was okay in school, you know, grades were okay, passing, but she knew that if I did not get the help that I needed, it would impede my learning for sure and affect me for the rest of my life. So my mother was the one who advocated for me to the nail, did everything she could. She read every educational book under the sun to make sure that I got what I needed.
And then, you know, fast forward a million years. Here I am with four kids of my own, each with different neurodiversities and learning styles, just being on the other side of the table, not being an educator, you know, taking that hat off, just seeing how, wow, you can really just let this kid just slip under the radar. We're not going to push because they're just so, they're okay. They're doing what they need to do. They're not acting out. Their grades are okay. But are they really learning anything?
William Curb: And it's, can we maybe help them thrive? Exactly.
Erika Levine: The system is set up for failure.
William Curb: All right. Well, we're kind of coming up on time here. So I was wondering if there's any final thoughts you wanted to leave the audience with.
Erika Levine: Thank you. Thank you for your time. And I hope that you will find my hero as beneficial as we do.
William Curb: I mean, it sounds like such a great system for parents that, you know, want to help their kids, but just don't know how.
Erika Levine: Yes. Thank you.
This Episode's Top Tips
Treat the IEP as a legal mandate and understand that it is a legally binding document that schools must adhere to strictly; it is not a set of globalized suggestions, but a tailored plan for a specific child.
Remember that the IEP team should include more than just teachers; it includes specialists like OTs, PTs, speech-language pathologists, and psychologists who can address the child's needs.
If a school denies services because the child is "fine" academically, parents can request an Individualized Educational Evaluation (IEE) from an outside psychologist, which the school may be required to fund. Remember we want to focus on our children thriving, not just passing by through school.